1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Cwilliams

    Cwilliams Registered User

    May 9, 2005
    2
    Wirral
    I'm a new member. I have joined because my Mum is a carer for her husband who is just 51. They had been married for only 3 years when he started to become ill. He's her second husband - my Dad died about 13 years ago. We thought she had finally found happiness and then this dreadful disease arrived on the scene.
    Since my step dad was diagnosed just over one year ago they have had very little support from anyone. They have re-located in that time to try and be nearer to friends and to my Grandma. But as it turns they don't see much of their friends and my Gran has fallen ill and is in hospital at the moment. Mum can't face her friends as she doesn't want to spend her time with them moaning.
    It is such a sad situation. My Mum feels absolutely trapped and is desperately lonely. She is fighting depression as hard as she can but it takes over sometimes.
    And although he doesn't actually express it in words we know my step dad feels lonely too, and worst of all he feels as though he is useless. He too is depressed.
    He has been to the local memory clinic but it is full of people of the generation old than he is. There appears to be no support for younger people with dementia.
    He needs some kind of counselling to help him cope and my Mum needs some support with the day to day stuff. She is exhausted from running the house and working too.
    I live away from home in London and I can't be there very often. Plus it is way too easy for me to switch off to it all when I don't hear from them for a few days.
    My fiance and I were due to move back but that has since changed and we will be away for the next couple of years. We can make it back once every month or two but Mum needs more support than that.
    I just don't know how to help her. She has been seeing a counsellor and the sessions make her feel even worse, because at the end of the day, this thing isn't going to get better or easier is it?
    What can I do? Does anyone have any suggestions?
    Thanks C :(
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello C

    Every story that involves dementia is a sad one, but your Mum's seems particularly cruel, and you are clearly on a fast learning curve.

    A first comment - wow, you have picked up a lot of knowledge very quickly indeed. Yes, friends do vanish. Yes, your Mum will feel trapped. She will want to run somewhere - anywhere - to be away from her situation, yet she will want to care for your step-dad. It is a dreadful, yet common, situation.

    Loneliness, uselessness, depression. All part of the life we gain when dementia comes in the door. The age thing is major. All care seems worked on the basis that people with dementia are really old. For someone who is young and in the early stages to have to go with 80 year old people with dementia - well, there can't be much that is more cruel. And it almost is more cruel to their partner, who feels so responsible for them.

    I don't have any bright suggestions....

    ...other than, use this forum. Listen to what a variety of people say and can suggest. We have all been there in some way. But as one of us said: "once you've seen one person with dementia - you have seen one person with dementia". Each road, each case is just a bit different. But there are enough similarities to make advice useful, if only to help you realise there are others in the same situation. Somehow that helps. Seems crazy, but it is true.

    Counselling? Well it works for some. Wasn't for me though. Could be your Mum may simply want her husband at this point. She can't get him back as he was, but she and he can take as much quality time out of each day as they can. It WILL get worse, but not necessarily that quickly.

    If the counselling sessions make your Mum feel worse, then stop them. The last thing one wants is to be made to feel worse at a time when you feel rotten anyway. I'm not one for acquiring tastes and acquiring a taste for feeling bad is not something I'd recommend.

    Does your Mum have access to the Internet? Would she be able to use Talking Point? If so, then that may help her a lot. Ifnot, then maybe you can do that - on occasion - for her.

    And your step-father? How advanced is his condition?

    Take it slowly, and day by day.
     
  3. Colin Cosgrove

    Colin Cosgrove Registered User

    Hi C,

    I'm very sorry to hear your story. Like Bruce says, the feelings your mum and step-dad are having are all too normal for younger people dealing with dementia.

    I'm not surprised your mum is struggling to hold down a job and keep the household running on top of all this. Have they been assessed by social services for any sort of support or assistance?

    I wonder, have your mum or step-dad had any support from the local Alzheimer's Society branch? They may be able to help with the day-to-day difficulties your mum is having keeping the house running, or they might be able to help with social contact for either your mum or your step-dad.

    If you can tell me what part of the country they are living in, there may be a specialist service for younger people that they can tap into. Services like that are sometimes few and far between, but it's worth checking.

    If you want me to have a look around for anything that might help them, either reply to me here, or email ypwd@alzheimers.org.uk

    All the best,
    Colin.
     
  4. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Caro, it's Kate..... I've been writing on here for a while. Your mum has my phone number, give me a call sometime. Me and Kevin do think about your mum a lot, and we don't know what to do to help. I think she finds me difficult to talk to because I'm dad's daughter. I know your brother feels bad, but I must admit I've been so wrapped up in how I feel that I haden't given much thought to my step-siblings!!!!

    Call me. Kate xx

    (P.S. to everyone else reading this, I'm her step-sister!!)
     
  5. Cwilliams

    Cwilliams Registered User

    May 9, 2005
    2
    Wirral
    Hi Mrs P,

    Thought it might be you, but didn;t want to make any assumptions! I have sent you a private message. Stay in touch.

    Cx
     

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